Juvenile Myelomonocytic Leukemia (JMML): Kaleo’s Story

Kaleo was diagnosed with juvenile myelomonocytic leukemia (JMML), a very rare form of cancer. One year after a bone marrow transplant, Kaleo is cancer-free.

Richard and Jennifer had a feeling that something was wrong with their son, Kaleo, in late 2016. He was catching frequent colds and having bouts of bronchitis. When Kaleo started to get unexplained bruises, they brought him to the family’s pediatrician for a blood test. The results were alarming.

“The doctor told us that he had cancer in his blood and told us to immediately bring him to the emergency room at Children’s Hospital of Philadelphia,” remembers Jennifer.

A rare form of cancer

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Kaleo was diagnosed with leukemia the same day. A multidisciplinary team at CHOP including oncologists, hematologists and geneticists worked together to refine the diagnosis to juvenile myelomonocytic leukemia (JMML), a rare cancer of the blood that affects young children.

Oncologists in CHOP’s Cancer Center, Leukemia and Lymphoma Program and Blood and Marrow Transplant Program coordinated Kaleo’s care. Together, they developed a plan to treat his condition: he would need a bone marrow transplant to give him new marrow that would produce healthy white blood cells. Kaleo underwent chemotherapy to manage his symptoms while clinicians searched for a bone marrow donor.

Jennifer and Richard were thankful for the emotional support that CHOP provided during the difficult time. “The nurses and child life specialists were so phenomenal to us,” says Jennifer. “Kaleo loved music therapy and art therapy. The attention that they provided to our family made us feel like we were at home.”

The family received good news a month later. Kaleo’s older sister, Scarlett, was a perfect match for a bone marrow transplant.

“I’m going to save my brother”

scarletScarlett was cared for by her own medical team, completely separate from Kaleo’s, and child life specialists helped Scarlett become prepared and excited about being a donor. “Scarlett would say, ‘I am going to save my brother with my magic cells!’” says Jennifer.

Nancy Bunin, MD, Medical Director of the Blood and Marrow Transplant Program, was in charge of Kaleo’s bone marrow transplant. Drs. Barrett and Tajin, specialists who conduct research on rare cancers, rounded out the research team. “We were very grateful that we had a leading expert like Dr. Bunin treating Kaleo,” says Jennifer. “And we were impressed with the fact that she and the team were researchers. We contributed Kaleo’s cells to the team for research – it was a gift for us to be able to pay it forward knowing we can help future patients with JMML.”

Jennifer and Richard appreciated how CHOP focused on all of its family members during the transplant. “The musical therapists played Kaleo’s favorite songs throughout his transplant, and Scarlett was able to visit him that afternoon,” says Jennifer. “Child life even decorated our door with a ‘Happy Transplant Day’ message.” “The Ronald McDonald Lounge for Oncology Families provided our family with free meals and donated gifts that kept our spirits high while living in the hospital and waiting to see if the transplant worked,” recalls Richard.

Jennifer and Richard were also thankful that all of the transplant services were provided at a single location. “Our one child was able to save our other child – and it was all done under one roof where the transplant took place right here in the heart of our city, Philadelphia,” says Richard.

A dancing machine

Kaleo responded very well to the treatment and recovered quickly. “Kaleo loves to dance. After he recovered, the team had a dance party to celebrate with our family while we were living in the hospital. It was a real breakthrough moment for us – it gave us hope,” says Jennifer, who keeps a video of the dance party on her phone.

About a month later, Kaleo was cleared to go home. He was closely monitored by the outpatient oncology team led by Nurse Practitioner, Ellen Levy at the Berger Center, who Richard and Jennifer describe as their “second family” for teaching them to care for a post-transplant child while living at home. The visits became less frequent over time because of his progress.

One year after his transplant, Kaleo’s results are reported to be perfect — he now has all new bone marrow. Most important – the leukemia is gone.

Presented by Chapman Auto Stores“Every member of the team guided us every step of the way,” says Jennifer. “The genuine excitement from everyone over Kaleo’s progress is wonderful. We are forever grateful to everyone at CHOP for saving our son’s life.”